Families and Friends Network at IMFAR

Peter Bell is executive vice president for programs & services at Autism Speaks. He is also a founding member of the Diversity Committee for INSAR and will serve as the co-chair in 2010-2011.

From its inception, IMFAR was a meeting that attracted hundreds of scientists, researchers, clinicians and even students who were interested in advancing the knowledge base of what autism is and how they can help improve the quality of life for those who live with the condition. And though the idea of IMFAR was originally conceived and funded by the two leading national advocacy organizations at the time (Cure Autism Now and the National Alliance for Autism Research, both of whom merged with Autism Speaks) and the M.I.N.D. Institute at UC Davis, the annual meeting quickly became the most popular venue for autism researchers to present their findings, exchange ideas and develop new collaborations to advance the field. Autism Speaks is a major sponsor of the conference.

Eventually a membership organization was formed called the International Society for Autism Research (INSAR) to help advance the quality, size and scope of the annual meeting. In 2008 INSAR created a new peer-reviewed scientific journal, Autism Research, to expedite the publication of key findings specific to the autism community. Without a doubt, IMFAR and INSAR have both been instrumental in developing the field autism research during the past decade as evidenced by the 1,700 participants who attended this year’s meeting in Philadelphia.

As one would expect, many families and individuals who are affected by autism are deeply concerned and interested in staying on top of the latest advances in autism research. It’s also important for researchers to get input from the patient population they serve. Each year, IMFAR attracts a contingency of stakeholders who want to stay abreast of these developments. Last year, INSAR formed a Diversity Committee to increase membership diversity for INSAR as a whole and to increase the participation of family members and individuals with autism as well as those visiting from other countries at its annual meeting.

This year, the Diversity Committee hosted a special luncheon during IMFAR called “Family & Friends Networking Luncheon.” The event was sponsored by Autism Speaks and I helped moderate the discussion. The Diversity Committee selected a panel of researchers from this year’s Invited Educational Symposia who included: Daniel Coury, M.D. (Nationwide Children’s Hospital), Craig Newschaffer, Ph.D. (Drexel Univ.), and Sarah Spence, M.D., Ph.D. (NIMH). In addition, INSAR President David Amaral, Ph.D. (UC Davis) was on hand to provide an overview of autism research in general as well as the history of IMFAR. He welcomed the involvement of families and individuals affected by autism and reinforced their importance in the planning of future meetings.

Dr. Coury, who is also the Medical Director of Autism Speaks’ Autism Treatment Network (ATN), shared details about the ATN and some of the exciting research findings that were presented at this year’s meeting. Many of the attendees were pleased to hear about the focus on GI and nutritional issues, sleep abnormalities and metabolic disorders that are present with many people living with autism. Dr. Newschaffer shared his enthusiasm about the future direction of epidemiology as a means of identifying risk factors associated with autism, in particular the increased focus on the role the environment plays. He highlighted his EARLI Study which is tracking the pregnancies of mothers who already have a child with autism from as close to conception as possible through the first three years of the newborn child’s life. And Dr. Spence discussed several autism-related clinical research projects that are taking place within the NIMH Intramural program including drug trials for immune disorders, sleep issues and epilepsy. Many of these trials are in response to parents’ concerns and will hopefully give future direction for the use and development of autism treatments.

The second half of the luncheon was devoted to questions from the almost 60 family members and individuals with autism spectrum disorders (ASD) who were in attendance. The dialogue was rich, honest and respectful. Some parents got a chance to express their concerns about the lack of treatment options and the need for a larger number of well-informed and trained clinicians in the community. On a final note, each panelist was asked what autism advancement (besides something they were working on) excited them the most. Two responded with the development of drugs for other neurodevelopmental disorders that could be relevant for autism with particular emphasis on older individuals; another was excited about the development of non-pharmacological treatments that have the potential to improve outcomes without drugs and the final panelist was encouraged by the developing consensus on potential risk factors associated with autism.

On a personal level, I was excited to witness the exchange of perspectives among these two important groups, families/ASD individuals and scientists. For us to find the answers we need to help those we love living with autism, it’s going to take strong collaboration between these two and this luncheon served this purpose nicely.

Imfar needed hundreds of parents. There were too in attendance possibly because of the huge $575 late registration fee. That is way too much. Remember unlike the scientists and org employees parents pay for these conferences out of their own pocket.

If AS is sponsoring imfar they should offer reasonable fees to parents. I could only stay 1day but had to pay the whole a
amount.

The major sponsors of this year’s IMFAR were Autism Speaks, the Simon’s Foundation and the NIH. Autism Speaks hosted local Philadelphia families to attend the ITA Tech Demo and try out the new technologies with their children. You can read more about that here http://blog.autismspeaks.org/2010/05/22/imfar-ita-techdemo/ – both the scientists and the families learned from and enjoyed the interaction. In addition, Autism Speaks hosted a few individuals with autism and a few parents of children with autism to attend and write about or video tape their experiences at the conference. You can read a father’s blog here http://blog.autismspeaks.org/2010/05/21/imfar-compton-father/ ASF was also a sponsor and provided a limited number of scholarships for families to attend IMFAR.

Sarah

May 26, 2010 at 1:27 pm

Thank you for the disclosure. And, my sincere thanks on behalf of the Philadelphia families/other families/individuals – which I really do believe is for the greater good/education of us all.

It is nice that AS “sponsored a few families” attend IMFAR but you need to be sponsoring a few 100 families and offering a 50% discount to any parent who would like to attend.

It is great that many families were at the tech demo but until parents actually attend IMFAR, ask lots of questions, talk to the researchers it is unlikely that the academic focus of the conference will change. AS must support parent voices where it matters most.

If the doctors do not want parents there all the more reason to get them to the conference! You are the consumer, you are the fundraiser and you are the one raising an affected child. The LAST thing we should be concerned about what the doctors think about lowering price of admission.